Arthrofibrosis

Arthrofibrosis

arthro = joint

fibrosis = excessive scarring

Welcome to my arthrofibrosis page. I’ve struggled, coped, and worked diligently to overcome this condition since November 2010. I’ve learned, sometimes through trial and much error, a lot along the way. The dearth of information on the internet left me limping down the road of frustration. Most of what’s out there is written in Greek (“arthrofibrosis,” anyone?), so I’ve attempted to record what I’ve learned in plain English. My hope is that this page will leave you feeling empowered and informed. You aren’t alone. I’ve been where you are right now.

I help people like you navigate the maze of arthrofibrosis through one on one coaching. You don’t have to do this alone. Please email me at [email protected] and learn more about my one on one coaching here.

I dedicate this page to two masters of arthrofibrosis, compassion, and patience–Dr. Steadman, who correctly diagnosed my arthrofibrosis and performed my surgeries three through seven until his retirement, and Dr. Singleton, who is currently my doctor and performed surgery number eight. The quality of the content on this page is a direct reflection of their unfailing guidance. Every step I now take, quite literally, is because of them. I deeply appreciate both of them; they’ve given me my life back.

I can never thank my physical therapists at The Steadman Clinic enough. To Meghan, Brooke, Kristen, Luke, and Thomas: a good surgery creates a foundation for healing, and you all have tirelessly helped me build a house. You’ve taught me how to work with my limitations, set reasonable goals (and achieve them), stood by my side when another surgery was in order, and celebrated my progress.

I would also like to express abundant gratitude for Dr. John McDonald, my doctor in Austin who has seen me through the arthrofibrosis roller coaster and encouraged my creation of Injured Athlete’s Toolbox.

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Guiding Principle:
Your clinicians are your teammates. Teammates don’t give up on each other when things get tough; they work together to succeed. I have always understood that Drs. Steadman and Singleton would never give up on me as long as I didn’t give up on myself. You want need to be able to say that about your doctor.

TRAUMA AND SYMPTOMS

Arthrofibrosis is a rare complication that happens when excessive scar tissue forms in a joint following trauma that involves bleeding (e.g. – knee fracture, infection following routine surgery, knee replacement, or a ligament tear). While it can occur in other joints (shoulders and elbows, for instance), for our discussion, I’m going to stick with knees.

Arthrofibrosis results in any or all of the following:

stiffness and pain

inability to fully bend (flexion) the knee

inability to fully straighten (extension) the knee

patellar (kneecap) immobility

heat – either locally or generally over the entire knee

Every case of arthrofibrosis is different. Some people present with pain, stiffness, patellar immobility, and are lacking only extension (that was my case), whereas others may only lack flexion, or have another combination of symptoms.

If you have any of these symptoms following trauma, please take them seriously and see a doctor, but not just any doctor. Below, I’ll talk about how to choose one.

Following surgery or other trauma, you may initially feel like you’re healing. However, as you start to load your joint more (weaning off crutches, walking, standing), you may begin experiencing disproportionate pain and stiffness (especially in the front of your knee) along with an inability to bend and/or straighten your leg. It’s worth mentioning again that arthrofibrosis is rare, but the sooner it can be addressed, the better the outcome.

CHOOSING A MEDICAL TEAM

I cannot overstate the importance of choosing a proper care team. Since arthrofibrosis is rare, few doctors specialize in treating it.

Remember: Seeing the wrong doctor saves you neither time nor money. There’s a good chance the “best” in your hometown has rarely seen arthrofibrosis. Such was the case with me. There’s also a good chance you’ll need to travel to see an expert.

You need a doctor and physical therapist experienced with arthrofibrosis.

It has been my (and my clients’) experience that few orthopedic doctors have the innate patience to elegantly manage a chronic condition. By elegant I’m referring to management of the emotional and surgical complexities of a chronic condition.

Too often my clients have worked with a doctor who “cleans out scar tissue.” I lived this scenario twice. It’s important to talk with your doctor about their methods of “cleaning out scar tissue,” and what tools they’re using.

Your clinicians are your teammates. Teammates don’t give up on each other when things get tough; they work together to succeed. I have always understood that Drs. Steadman and Singleton would never give up on me as long as I didn’t give up on myself. You wantneed to be able to say that about your doctor.

Since every case is different–from symptoms to surgery to rehabilitation–you need a physical therapist familiar with arthrofibrosis’s variability as well as scar physiology. Your medical team’s understanding that scar grows in response to load is key to your rehabilitation.

DIAGNOSIS

Getting a proper diagnosis is your foundation but can be a torturous journey for many. Finding a doctor who is intimately familiar with arthrofibrosis will save untold suffering.

Be aware that sometimes scarring does not show up well on MRI or isn’t appreciated by a radiologist not specifically looking for it. This happened to me at my local imaging center, even though I had significant arthrofibrosis.

At The Steadman Clinic, imaging equipment can be set to produce the best image of the scarring possible; also, the radiologists are experienced at reading images of knees with arthrofibrosis.

Observe: A doctor experienced with arthrofibrosis will use their hands to feel the temperature of your knee (often knees with arthrofibrosis will feel hot, and they may not have much, if any, swelling) and restriction with popping/grinding as you bend and straighten. Fancy equipment will get you a nice image, but your trust is best placed in a good set of hands.

TREATMENT

Arthroscopic surgery [on a knee with arthrofibrosis] can be complex and technically challenging; therefore, choose a doctor who has both significant arthrofibrosis experience and advanced surgical skills–the scarring associated with arthrofibrosis changes the way your knee looks through a scope, including altered tissue planes that can distort normal anatomy.

Treatment the wrong way

Too often my clients have worked with a doctor who “cleans out scar tissue.” I lived this scenario twice. It’s important to talk with your doctor about their methods of “cleaning out scar tissue,” and what tools they’re using.

Why do tools matter? Most of my clients with arthrofibrosis, myself included, have had failed surgeries during which scar tissue was “cleaned out” using a tool called a shaver (also called a debrider).

View 1 of shaver

View 2 of shaver

View 3 of a shaver

While this is an important arthroscopic tool, it is not well suited to address arthrofibrosis. It isn’t precise, and by virtue of shredding scar tissue, it causes bleeding–sometimes profuse bleeding. My two pre-Steadman Clinic surgeries required use of a tourniquet to stop bleeding. Earlier, I mentioned bleeding can lead to scar tissue formation, so by using a shaver/debrider, the very environment that resulted in scarring to begin with is recreated.

If you’ve had a previous failed surgery, have a look at your surgical images and see if you notice a shaver in the photo.

Treatment the right way

According to Dr. Steadman, there are three main components to arthrofibrosis (while everyone shares number 1, not everyone will have numbers 2 and 3), each of which is treated with different modalities.1)Scar – Surgery addresses the scar as well as any pain-producing areas inside the joint. An anterior interval release can be accompanied by synovectomy (an arthroscopic procedure to remove inflamed synovial tissue) and chondroplasty.

Drs. Steadman and Singleton strive for a “bloodless surgery.” Tourniquets are not used in the operating room during arthrofibrosis surgeries at The Steadman Clinic because they are not necessary.

The goal of surgery is to release scar tissue causing restriction. It’s likely that not all of your scarring is symptomatic. Drs. Steadman and Singleton determine based on history, physical exam, and imaging which scarring is causing restriction and a loss of space within the joint. Cleaning out every ounce of scar tissue is not the focus (see my first point under “treatment the wrong way”).

Dr. Steadman found using a heat probe called an ArthroCare Wand allowed him to precisely address offending scar tissue by burning and releasing it. (Pardon the notes on the images.)

ArthroCare Wand

Using the ArthroCare Wand (pre-release)

Using the ArthroCare Wand (during release)

Using the Arthrocare Wand (after release)

Arthrofibrosis surgery is the intersection of medicine and art. Your doctor needs to have the experience to carefully and gently identify aberrant scar, address it, and leave non-symptomatic scar alone.

Drs. Steadman and Singleton finish each surgery by slowly decreasing the saline pump pressure, thereby decreasing the pressure inside the knee joint, and looking for bleeding. Using the ArthroCare Wand, this allows them to cauterize any bleeding before the knee is closed.

2)Joint capsule tightness

Here’s some terminology and a diagram to help navigate the knee from the outside in.

The joint capsule is soft tissue containing the synovium and synovial fluid.

Synovium is the lining on the inside of the capsule that makes synovial fluid.

Synovial fluid lubricates the joint and acts as a secondary shock absorber to the cartilage.

Scarring results in a loss of range of motion that can result in joint capsule tightness.

Improper functioning caused by joint capsule tightness may increase wear and tear on cartilage and other joint structures.

In some cases, after the scarring has been ameliorated through surgery, joint capsule tightness will also need to be addressed.

Insufflation addresses joint capsule tightness.

Insufflation is a fast and effective procedure performed under general anesthesia. Approximately 100mL (the actual amount varies for every individual and is usually between 60 and 180mL) of saline is introduced into the joint capsule causing it to stretch, increasing space inside the joint. After several minutes (variable from 30-60 seconds up to 5 minutes), the saline is removed and you’ll be on your way to recovery.

I required surgery (anterior interval release/synovectomy/chondroplasty) plus two insufflations before regaining my full range of motion.

Please note that while the insufflation procedure is relatively straightforward, it is a further insult to an arthrofibrotic knee and, in my experience, post-op recovery and rehabilitation was very nearly as slow and methodical as after my arthroscopic surgeries.

3)Inflammation

Have you noticed that your knee feels warm? That’s inflammation.

Inflammation is part of arthrofibrosis, and, left unchecked, results in more scarring.

PHYSICAL THERAPY

With arthrofibrosis, the best surgical outcome can be ruined by an inappropriate physical therapy regime.

Your physical therapy should never be rough and forceful.

In my experience, extreme diligence and restraint over an extended period (many months) is paramount. Remember that friend with a muscle tear, or whatever, who pushed through it and eventually got better anyway, even while ignoring most of her physical therapy exercises? Arthrofibrosis is not nearly so forgiving. Promise me that you won’t push your luck.

With the consent of your physical therapist, back off on your activities–immediately–any time you feel increased heat, tightness, or pain.

Learn to love your CPM (Continuous Passive Motion) and ice machines.

Ice frequently, but avoid frostbite, which has the alarming effect of increasing heat in the area you are trying to cool while precluding further icing until it recovers. Always place a towel between your ice and skin.

Take a page out of the cyclist’s bible: don’t stand when you can sit and don’t sit when you can lie down.

Arthrofibrosis surgery is the intersection of medicine and art. Your doctor needs to have the experience to carefully and gently identify aberrant scar, address it, and leave non-symptomatic scar alone.

EXPECTATIONS

I’m aware that what I’m about to share may evoke nightmares of athrofibrosis prison. There’s good news. If you have proper expectations, you’re more likely to have a positive outcome. The following is based on my experience. Since every case is different, your experience will be different, but I do know my experience is similar to that of many arthrofibrosis patients I’ve met and clients with whom I’ve worked.

Fresh out of surgery–and sometimes for months–simply sitting in a chair with your knee below your heart may cause it to get hot. It seems ridiculous, but it’s true. It took me 7 months after my first surgery with Dr. Steadman to be able to sit in a chair for an hour without my knee getting fiery hot. Remember, heat promotes regrowth of the scar; it’s very important to keep heat and inflammation to a minimum.

Progress will be–and has to be–glacially slow. It took me almost a year to do a straight leg lift with control over my lower leg.

Nobody will be able to tell you how many surgeries you’ll need and when you will be better, or to what extent you’ll improve. That’s because all cases are different (I sound like a broken record, I know.). At some point, you’ll have to make peace with the indefinite. Wake up every day and do your therapy with the recognition that big gains come from an accumulation of small gains.

The grocery story will become Mt. Everest. Get help with shopping and cooking.

Other people you meet at physical therapy with seemingly worse injuries will get better faster than you. Don’t compare your journey to theirs. Arthrofibrosis is chronic.

It’s highly unlikely that your affected side will ever feel like your unaffected side. In most cases, that doesn’t mean you can’t eventually have a functional leg.

You will grow weary of moving your kneecap back and forth. Don’t overlook seemingly simple exercises.

You’re going to need a lot of help, especially for the first 3 months after surgery.

Learn to embrace being on your back. You’re likely to spend many hours each day (sometimes for weeks or months) in a CPM. Think of it as training for a gold medal in the sofa surfing Olympics.

Since you won’t be able to move like you’re accustomed to, work with your physical therapist to create an aerobic training program that’s injury friendly (think hand bike, one-legged rowing machine, or swimming with a pull buoy). Also, ask for a few good core drills. You wouldn’t believe how much training it takes to lie down for 6 hours a day strapped to a machine that’s slowly bending and straightening your knee. If you don’t train your core, your back will revolt.

I purchased this machine at The Steadman Clinic. It has served me well for three years and is still going strong. Setting it up on a chair so the pump doesn’t have to work too hard will keep it quiet.

These crutches (covered by most insurance) win the most improved gimp paraphernalia award. Get crutch crampons if you live in a snowy climate.

Find yourself a hobby that is gimp-friendly. For some ideas, click here.

INSPIRATION

I know this is all overwhelming. I’ve been where you are. Please know you aren’t alone, and that with dedication and patience, it does get better. People with arthrofibrosis–me included–do recover and can regain the strength to connect with old activities. Hopefully now you feel empowered to take the next steps on your journey.

Thank you to Dr. Sheila Strover for this brilliant educational video about arthrofibrosis.